What to do when our elder's behavior is beyond our ability to cope?
by Carol Bradley Bursack, Editor-in-Chief
Caregivers are only human. We generally get into caregiving for our elders because of our love for them. However, diseases such as dementia, Parkinson's disease and strokes, can take such a huge toll on the elder that we barely recognize the personality of the person we are caring for. They can become so difficult to manage, care can be so exhausting, guilt over not being able to make things better for them can be so overwhelming, that we don't know where to turn. How do we cope when we can no longer cope?
Alzheimer's and changed personalities
By the time Alzheimer's disease has settled in enough so that a person needs care, there are generally personality changes that can be alarming. Some people with Alzheimer's disease remain sweet tempered and fairly easy to take care of. Most people, however, suffer from understandable but difficult to manage frustration over not being able to complete tasks, fear because they don't understand their surroundings, and often paranoia where they accuse the very people caring for them of stealing and/or abuse. Many get, in the late stages, to a place where they don't recognize their caregiver, be it a spouse or adult child. All of these stages and conditions are extremely hard on the family and caregivers and not everyone can cope. This is a time when many families must turn to assisted living facilities or nursing homes for the sake of the care receiver as well as the caregiver.
Parkinson's, strokes, multiple sclerosis and other ailments
Parkinson's disease can have a dementia element, but not always. Also, a certain number of people who get Parkinson's also develop Alzheimer's disease as a secondary ailment. Whether there's dementia present or not, a person with advanced Parkinson's disease can become difficult to care for at home. Once the person gets physically rigid, as often happens with the disease, managing their needs often takes more than one family caregiver.
The same can happen after someone has had a paralyzing stroke, severe cancer, multiple sclerosis (MS) or any number of diseases. Even diabetes can become very difficult to manage, unless there is a family member available at all hours to do blood sugar checks, regulate the person's diet and cope with anything from dementia to amputations to the blindness that can be side effects of the disease.
How to cope when there is still some ability to provide hands-on care
- First, understand that you are not giving up on the person when you finally admit that you must take a step back and ask for help.
- Try a support group, especially one that is disease specific, such as one for Alzheimer's or Parkinson's caregivers. Yes, I know, getting to a group meeting sounds impossible. I never could see a way that I could find time to attend a group and still care for all of my elders. There are only so many hours in each day, and many times people who are caring for their loved ones in the home can't leave without a relief person on hand.
- That said, there are many support groups on line, including www.wellspouse.org for well spouses of people with any type of chronic disease, www.parkinson.org for people with Parkinson's and their caregivers (there are many other groups for this disease), www.nationalmssociety.org for people with MS and their caregivers and www.alz.org for Alzheimer's support.
- Phone support for Alzheimer's caregivers is available. Please read this article on our Eldercarelink.com blog if you'd like help finding out how to get phone support: Alzheimer's Association and Alzheimer's Foundation of America Offer Unique Help.
- In-home care can be a lifesaver, literally, for the caregiver who cannot get any time alone. Whether the person afflicted with a disease likes it or not, a caregiver needs a break. If there are not enough friends, neighbors or family members who can come in to take care of the person needing help, then hired help is necessary. In-home agencies can provide respite care in blocks of time that are worked out ahead of time. This gives the primary caregiver time to recover some sense of balance before returning to the caregiving "nest."
- Adult day care can also give a family caregiver a much needed break. Often the care receiver gets a lot of pleasure out of peer interaction and other ways of socializing, and then because he or she is happier, the person is easier for the family caregiver to care for.
What to do when behavior issues are too much and a break isn't enough
- When behaviors become more than a family member can reasonably handle, often an outsider can do a better job. That idea can be a tough pill to swallow for someone who is trying to do the best thing for a loved one, but it often proves true. Family dynamics can enter in to caregiving situations in a negative way and make it nearly impossible for a family member to cope. If this is the case, most likely it's time for some help in the form of care from outside of the home.
- Assisted living is often a good choice, if the center provides a secure environment for those with dementia. However, if the person needs significant health care, such as the type of care someone with diabetes, advanced MS or advanced cancer may need, then a nursing home may be the best choice.
- The family caregiver must realize that stepping back a bit doesn't mean giving up. When you ask for help from outside the home, you are getting extra help, you aren't abdicating your duties for your beloved spouse or parent, nor are you becoming a lesser caregiver. You are simply getting help with caregiving. You will remain part of the care team, and you will remain your loved one's advocate.
- Guilt is not an option. If you are having problems with guilt over getting help, please read You Are Still a Caregiver When You Get Outside Help. If you want to get a feel for the steps in getting outside help try Caregivers Need Support: Get Help along the Way. Sometimes knowing you aren't alone is half the battle.